A mother's battle against autism

Page Dowdy/Chesterfield Observer Sally Kirk (a pen name) recently wrote a book about her son, Will, and his struggle with autism.

At around 18 months old, Sally Kirk* noticed her son Will was having coordination problems and motor delays. Never a happy child, he had severe anxiety problems throughout his childhood. By first grade, he had been diagnosed with Asperger's Syndrome, an autism spectrum disorder.

"He would get so unhappy and have these nuclear reactor meltdowns," says Kirk. "He would cry, and he'd stay upset for about 30 to 35 minutes after whatever the issue was that upset him. He couldn't get over it. He had a lot of trouble with transitions."

He didn't seem to have much of a sense of the past or future.

As an older child, he had restrictive interests - LEGO and Bionicles toys.

"That's all he would talk about," Kirk recalls, "and he wouldn't let you get a word in edgewise."

Kirk's family moved to Chesterfield County from Indiana when Will was in third grade, and he was enrolled in a program the school system offers for higher-functioning individuals with autism. He attended classes with a special education aide.

However, Will's mother started him on an aggressive battery of biomedical interventions beginning at age 11, and now, at age 15, in his freshman year at Clover Hill High School, Will doesn't take anxiety medications or require an aide at school. While he still exhibits "some social skill deficits," his mother says, he no longer has an Asperger's diagnosis.

A part-time computer programmer and mother of three, Kirk chronicles her battle to heal her son in her new book, "Hope for the Autism Spectrum: A Mother and Son Journey of Insight and Biomedical Intervention," published by London-based Jessica Kingsley Publishers, which specializes in books about autism and other mental health issues.

"Many kids do recover," Kirk says. "A larger percentage of kids like my son improve, but they still remain somewhere on the spectrum."

About one in every 150 American children has autism, according to a February 2007 prevalence report issued by the Centers for Disease Control and Prevention.

Autism is referred to as a spectrum disorder because it manifests itself in a range of ways. At one end of the spectrum are lower-functioning individuals who are unable to speak and have great difficulty communicating with others. These individuals usually test as mentally retarded and may require lifelong care. At the other end of the spectrum are people like Will, who may seem overly talkative and very eccentric with obsessive, restrictive interests and extreme social awkwardness.

No one knows what causes autism, and while there is no absolute cure, there are several effective recognized treatments. Probably the leading therapy with the longest track record of research is Applied Behavioral Analysis (ABA), which is highly recommended by national advocacy groups like Autism Now.

However, Kirk didn't use ABA.

"What works for one may not work for another," she says. Children with autism "have a lot of things in common, but they are like snowflakes in a lot of ways, too. They're very much individuals."

About five years ago, Kirk stumbled across the Defeat Autism Now! (DAN) group, which contends that autism is not a mental disorder but a series of physical disorders that affect the brain.

In her book, Kirk (who is quick to point out that she's not a doctor or medical expert) discusses the variety of treatment options she used on Will, most of which are not covered by insurance.

In addition to a battery of expensive vitamins and minerals, she placed Will on a gluten-free and dairy-free diet. After removing dairy from his diet for three weeks, "it was like the brain fog lifted," she recalls. "He started becoming interested in other things, and he could tell me about the past."

Some parents of children with autism may be reluctant to restrict their child's diet since so many children with autism already are picky eaters and may outright refuse to eat certain foods, Kirk notes, but she says that after a while on the restricted diet, she found her son more willing to try other foods.

Will also underwent a controversial therapy known as chelation, in which heavy metals such as mercury are purged from the body's bloodstream. There have been at least two deaths tied to this therapeutic approach, but Kirk's book contends these were due to doctors performing the procedure incorrectly.

For Kirk, the proof of biomedical intervention's efficacy lies in Will's advancements.

"With biomedical intervention, his interests widened," she says. "He has a lot of interests now. He plays with his brothers, he enjoys going outside, whereas before it was LEGOs, LEGOs, LEGOs 24/7. He will still play with LEGOs sometimes, but it's not the only thing in the world anymore. Now he has lots of different interests. Right now, they're playing Risk," she notes.

With her book, Kirk says, "I want [readers] to take away the idea that biomedical intervention really does offer hope to our kids, though it does not work for everyone, and this book makes it very easy to understand, giving parents practical information so they can do it themselves."

Kirk's book is available online through Amazon and Barnes & Noble.

For more information on autism, visit www.autism.com.

* Not their real names. "Sally Kirk" is a pen name, and author does not wish to disclose her real name to help protect her son's privacy.